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The portugués programm on Rare Diseases

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The portugués programm on Rare Diseases. José Róbalo. Presentation of the Strategy in Rare Diseases of the National Health System. (Madrid, Ministry of Health and Social Politics, 2009).

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The portugués programm on Rare Diseases

  1. 1. <ul><li>The Portuguese Programme on </li></ul><ul><li>Rare Diseases </li></ul>José Marques Robalo Deputy Director-General of Health Ministry of Health Portugal
  2. 2. THE PORTUGUESE PROGRAMME ON RARE DISEASES <ul><li>The Portuguese Programme on Rare Diseases has been approved by the Minister of Health on November 12th, 2008 </li></ul>
  3. 3. THE PORTUGUESE PROGRAMME ON RARE DISEASES <ul><li>How was this Programme prepared? </li></ul>
  4. 4. THE PORTUGUESE PROGRAMME ON RARE DISEASES <ul><li>The first draft of the Programme was developed by a workgroup of 7 experts from these fields: </li></ul><ul><ul><li>health care, </li></ul></ul><ul><ul><li>medical research, </li></ul></ul><ul><ul><li>clinical laboratories, </li></ul></ul><ul><ul><li>orphan drug agency, </li></ul></ul><ul><ul><li>administration . </li></ul></ul>
  5. 5. THE PORTUGUESE PROGRAMME ON RARE DISEASES <ul><li>This programme was on public consultation until January 31 st , 2008 </li></ul><ul><li>Workshops were held with the stakeholders (health care professionals, researchers, drug industry and patient associations). </li></ul>
  6. 6. THE PORTUGUESE PROGRAMME ON RARE DISEASES <ul><li>The final draft incorporated all the inputs from the public consultation and from the stakeholders. </li></ul>
  7. 7. <ul><li>TARGET </li></ul><ul><li>All individuals affected by rare diseases, considered within their families and communities. </li></ul>THE PORTUGUESE PROGRAMME ON RARE DISEASES
  8. 8. THE PORTUGUESE PROGRAMME ON RARE DISEASES <ul><li>Improve the national response to non-satisfied health needs of people with rare diseases and their families; </li></ul><ul><li>Improve health care quality for people with rare diseases. </li></ul>MAIN GOALS
  9. 9. THE PORTUGUESE PROGRAMME ON RARE DISEASES <ul><li>Intervention </li></ul><ul><li>Training </li></ul><ul><li>Collection of data and information analysis </li></ul>THREE MAIN PILLARS
  10. 10. INTERVENTION STRATEGIES <ul><li>Propose specific financial rules for accredited reference centres; </li></ul><ul><li>Define criteria for early diagnosis of rare diseases; </li></ul><ul><li>Guarantee long term, health and social care to people with rare diseases; </li></ul><ul><li>Propose specific support and inclusion to children with rare diseases; </li></ul><ul><li>Create and disseminate guidelines of “best practices” for the promotion of clinical quality and patient safety of people with rare diseases; </li></ul><ul><li>Monitor efficiency and safety of the orphan drugs. </li></ul>THE PORTUGUESE PROGRAMME ON RARE DISEASES
  11. 11. TRAINING STRATEGIES <ul><li>Promote specific training on rare diseases for health professionals; </li></ul><ul><li>Create and disseminate self-assistance manuals; </li></ul><ul><li>Disseminate scientific information and the available resources. </li></ul>THE PORTUGUESE PROGRAMME ON RARE DISEASES
  12. 12. STRATEGIES FOR DATA COLLECTION AND INFORMATION ANALYSIS <ul><li>Develop partnerships between health services, investigation centres and patient associations; </li></ul><ul><li>Monitor health gains resulting from the programme implementation. </li></ul>THE PORTUGUESE PROGRAMME ON RARE DISEASES
  13. 13. <ul><li>What has been done </li></ul><ul><li>until now? </li></ul>THE PORTUGUESE PROGRAMME ON RARE DISEASES
  14. 14. “ The times… they are changing” José Robalo Deputy Director-General of Health Ministry of Health Portugal www.dgs.pt [email_address]

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